Future plan? The first big meeting with Plymouth Brain People.

We set off early for the 10.30 appointment with Plymouth/ Deriford Hospital brain surgeons. Truro have stepped away from the deal saying that this is all beyond what they can can do, but are still sitting there in support. The hour long trip has us thinking "what next?", " what's possible", " what do they have up their sleeve?".
We get into the meeting room with a single surgeon. Relaxed young guy who introduces himself and we all sit down. Looking though the most recent scan he shows the location of the new tumour on the left side of my brain and the possibilities of surgical removal. Surgery is possible from what he can see, but he's quick to lay out the serious risks which include loss of speech snd control of the right side of the body. He runs a few basic physical tests on my sight, strength and co-ordination. All seem pretty good.
While he confirms that the "Primary" area where my Cancer started 5 years ago was is very clear and healthy looking the new finding suggest that the Cancer is now in my blood and moving around my body. This suggests that the Cancer may well be developing elsewhere (lungs, liver etc), so will have to be checked with a full body scan. Only when this is analysed can a serious decision be made on how this can be takled. There were was suggested use of chemo, Radio and surgery depending on what the information the scan gives.
So... until we have the new scan that it for now. It was good to meet this person, he was very confident and relaxed which made him easy to communicate with. We drove home just thinking quietly about what had just happened. Perhaps I expected too much in a full battle plan, but a least things are moving. Just looking forward to the kids getting back from their day trip so going to rest up till then and try to keep this out of my mind for a while.

A life change and need to break this limbo...

Okay... I've not really bothered or needed to enter on her since getting back from London last Feb. It hasn't felt that important as the story has pretty much been the same throughout.
We returned to London in April to have a scan and result that would indicate the success of the Jan/Feb Radiotherapy treatment... it did. Professor Nutting was very happy following the visual test and said it was "looking good" and " we will see you in September for the next scan/check). So, off we went home, happy and looking forward to moving forward in coping with the expected symptoms that the RT treatment had left behind.
The last three or so months has been a struggle. Bouncing between trips to hospital and a huge list of issues we have always thought were to do with treatment. My daily life has always needed a lot of rest and has often been broken up three hour sleeps caused by the pain killer medication that has been in place to cope with the pain in the left side of my face/jaw. This alone has always caused a lot of frustration when all I've really wanted back is my family, friends and surfing. I've been collecting a quiver of new surfboards from my favourite board builders, new summer suits and gear in anticipation of getting back in the sea. I've managed a paddle with a friend on a flat day, but that has been it thanks to the introduction of strange dizzy spells caused by standing to quickly.
As the investigations into these issues has deepend it called for an MRI scan to try and find out what was the main cause of these problems. Last Friday we were visited by our local GP with the readily from the scan. The written report gave the result of scan exposing the possible re-growth of the old NCP tumour which suggests the RT from London has not worked, but also a spread into my brain into two places. This information is not 100% confirmed in its detail, but the presence of Cancer in my head again it certain. The difference of this announcement is that it is aconmpanied by the almost 100% certain fact that this is not a curable situation and when a patients cancer spreads to the brain there is nothing that can medically be done beyond pain control. The fear of Cancer has been around me since the first encounter in 2011. It lingers daily, but has always been faced with a strong sence of hope regarding escape from what we all know as a premature end to human life. Being told that the single direction available offers only a controlled end within 6-12 months has set a very unfamiliar scene.
The thing is we are all set to die, it's part of life... but to have respected medical people announce a rough idea when based on other peoples ends in a similar situation is surreal to say the least! Any of us could loose our lives today, tomorrow, this year... who knows??? Who wants to know???... no one! Simple as that. It's a good part of lift being blissfully unaware of how, when or anything to do with your departure from loved ones and this amazing place we live. Today thow, I have begun to live by the opposite... and it hurts more than anything I have ever experienced.
The biggest pain in this so far is the concern for kids... the unfairness of this is beyond brutal. Why should they loose their dad?... and the endless questioning along these lines this week has been fierce to say the least. Have I reached any point of conclusion or understanding?... no, nothing at all.
So... we are still in this place where the olan for the future is not set. This is because we haven't had all of the information and confirmation of what is doable and what is not. We spoke to London
and the Prof has said that he needs confirmation that there is nothing either surgical or in a different direction possible as he is reporting back with limited info. Once we  have  this big picture and we have met with the surgical team in Plymouth we will be called to make a decision and either try to move forward or it may just be that there is nothing to do, no treatments just a bit of control regarding pain and remaining lifestyle???? This has been the biggest and strangest part in this so far... "The Choice". One is it not fight, roll over, engage and share a short, but high quality peice of time before the end OR through treatment... battle, extend, push, suffer, try to extend the time. The problem is quality of life. I've been there before... it's awful. You are not you, you are a cancer victim inside and out. You become a person who is riding constant negative problems and both stories are predicted to end in the exact same way just a slightly further time away. This is the limbo we are in right now. Just hoping that some kind of clarity can be raised soon. C

Side burns, ice cream and tough answers.

So... finally home, finally able to see and spend much needed time with family. I can't really express what it's been like having to try and switch off all those thoughts and feelings about missing home and the kids and just trying to knuckle down into the last few rounds of Radiotherapy... but we did it, and to be honest, even though it was only last week it already feeling like a long time ago. As I think I've explained before it's not uncommon for radiotherapy to continue working for a fair few weeks after treatment has ended. This seems to be the case this week. My throat and mouth are feeling very sore and the back of my throat seems to have a whole new set of open sores that have appeared this week. This is making eating a painful and challenging ordeal, but I'm determined not to end up with a stomach feeding tube (PEG) like I had last time, so I'm sticking at it. I've only lost about 7kgs in the last four weeks, so I'm hoping I can keep it at that rate for the next month or so until things start to settle. I've pretty much lost my voice to. I think the strain of hacking up a good couple of pints (no exaggeration!) of rubbery green and yellow phlem during each night are playing a big part. I remember this phase well from last time and I'm just trying to hang on the knowledge that it's not for ever and will improve in time. The burns on my face are sore and itchy but settle quickly using an Aloe gel a couple of  times a day.
No voice, facial burns, fatigue, and random painful spasms in the back of my neck have made it not just difficult to get out and about, but has made me pretty reluctant to accept visits or be around people at the moment. I really want to see people, but Im not sure I can actually offer that much in return... other than someone who will most likely whisper for a few mins and then pass out. I came to the conclusion the other day that I'm best off hanging on till things improve. It's still been really cool getting texts and messages via other means. At least I can respond without running myself into the ground.
I wish there were more to tell, but between lots of hugs with the kids, sleeping a lot and watching films there hasn't really been too much going on. Each day at the moment is a tricky obstacles course of trying to eat 1500 cal, getting medication done in the correct order at the right time and trying to stay positive in some way. All these things have required more effort than I remember this week. Despite being home and having everything I've missed for so long right in front of me its been very frustrating in many ways as Ive not been able to engage with it all in the way I want to. It still feel is like I'm sitting on the sidelines of daily life unable to fully participate.... but again, I know it's there, it's just a case of being patient and committing to the seemingly endless daily routine... Take the drugs... try to eat... get the rest... REPEAT!
Bethan and the kids have been great, really helpful and very understanding. I've had a few enquiring conversations with Joel that usually begin with questions like "So what if you still have Cancer and he doctor can't give you anymore treatment...?"... those ones are real tough to find an answer to in my own head right now, never mind providing a rational explanation to a 7 year old who needs you in his life. It's all very tough at the moment... and I keep having to say "things could always be worse" to myself, but It been s heavy week so far and I know it's far from done.

Final Countdown...

So this is it, the final week. As I sit here with only three radiotherapy sessions to go it's hard not to think about the the future. In the short term, getting home, seeing everyone, breathing in fresh sea air and being able to stand and stare into horizons that aren't obscured by concrete and towering buildings, sleeping in my own bed, you know... the stuff we all miss when you spend time away. I do think it's going to feel a little bit strange though. I almost feel a bit apprehensive about it all and I can't really give you an exact reason why. Maybe it's leaving the umbrella of care that the team at the hospital have provided, and the safety of knowing that if anything goes wrong it can be fixed almost immediately. Maybe it's leaving the treatment itself. Although there will be a period where the radiation keeps burning away.. a bit like when you take a ready meal out of the microwave! I will begin the next phase of healing and all the damage that's been caused will settling down. I think the core of this anxious feeling comes from the knowledge that in the not too distant future I will have to come back to London to be scanned and see if the treatment has worked, or not. The date for this was revealed to us yesterday as April 6th. We have been through these moments many times since this began in 2011 and I've expressed the turmoil that accompanies those events many times in this blog. At the moment it feels distant, and though it's still a concern it's being overridden by the positive things in the present. The fact that I'm not actually that ill is playing a big part in this. Don't get me wrong this last 6 weeks has been far from easy and this week has taken on a new dimension of difficulty especially where eating food is concerned. The contrast for me though is thinking back to this phase of the treatment last time in 2012. I was in hospital having intravenous hydration and regular blood transfusions and was pretty far from okay. This time, despite getting tired quickly I'm up and about, washed and dressed everyday, able to eat solid food (to some degree), drink liquids and take medication orally... it's all very different. The only external change is the two areas where the radiation enters my head. My skin on both sides of my face, just in front of my ears looks like its been to Barbados, where the rest of me has definitely been indoors in central London for the last 6 weeks! So, me, my mum and my brown cheeks will be heading back home to Newquay on Friday. My last treatment is on Friday morning and then we get straight of to catch the plane as soon as we are done.
Mum and I have done well over the last 6 weeks. I know (and Bethan will back me up here) I am not the best patient in the world. I'm moody (yes, more than usual!), irritable and can be snappy and rude even to those who are trying their best to help. I can only explain this behavior by saying that it's fear and anxiety built up around the many layers of this situation that make me respond this way, but I fully understand how me being angry at the situation can make those around me feel uncomfortable as though it's directed at them...it's not, and for that I can only say I'm truly sorry. We thought it best that Bethan stay with the kids at home in Newquay. It made sense to upset their routine as little as possible. So, my mum was assigned to come down with me to help out if needed. We only have what we went through last time as a guide and at this point I was too weak to even dress or feed myself, so we guessed some assistance would be needed. This has not been the case this time and these extreme circumstances have been avoided. Mum (like a rock) has still been there everyday helping with medication, food shopping and handling timings/ arranging appointments at the hospital. I'm guessing it's been quite a lonely exercise for her especially over the last few weeks where I have been unable to speak very clearly or for long periods of time and have been spending large chunks of the day sleeping. We may have had a few scuffles, but nothing we can't come back from. I think that's to be expected when you are living in each others pockets for 6 weeks. In all though I think we have managed well, been a good little team where more than often Ive been the weakest link.
It was my final meeting with Prof Nutting yesterday. I had wanted to ask him for some time if through all the tests and scans that he had done and all the information that had been gathered, was there any clue as to how my cancer may have come about? I put this question to him in the meeting and he was swift to respond. He said "Yes, he result from you biopsy shows evidence of Epstein Barr". Now, I've read around my cancer extensively and new right away what he was talking about. The Epstein Barr virus is caught by over 80% of people on the planet at some point in their lives. It's linked to Glandular Fever and in the majority of cases a functioning immune system will clear the virus naturally. If it is not cleared it can lead to changes in DNA that eventually develop into many different forms of illness including Cancer. This has been clinically proven to have links to Cervical Cancer in women as well as other forms of Head and Neck Cancer... Nasopharyngeal Cancer being one of the main ones. I asked if there were any treatments that can be given such as vaccines or immunotherapy available post treatment. He replied that there isn't at this point, but clinical trails are going ahead in the near future to explore possibilities in this area. I said right away that I would love to be involved if that was the case.
We left his office free for the rest of the day, but I couldn't help wondering about the whole Epstein Barr thing. We obsess these days about diet, stress, lifestyle and environment and to a point those concerns are worthy and very important, but it seems to me that sometimes you just have to realise that cancer can come about by straight up bad luck and things that are well beyond our control.

23 of 30...

Okay, it's been a week or two since I last wrote anything on here. Life in London has become a strict routine of daily medication and daily hospital appointments. The "pain team" have been very good at staying ahead of things with regards the management of pain caused by the radiotherapy side effects. I like the way that they have pre-empted everything, making sure that I had the pain relief options at hand should they be needed as the symptoms worsen. They started me on a Morphine patch about 10 days ago. This is a small clear patch that allows the drug to enter my system slowly by being absorbed through my skin on my upper left arm. This can be added to as required by more morphine in tablet form if needed. I was also give a few different options of mouth washes that providing you learn the correct order they can be really effective in allowing me to eat with out too much pain or discomfort. I have also been issued a nebuliser, this is a breathing mask that works alongside a pump to give a vapour of saline solution that helps get rid of the dryness that occurs through the silva glands being damaged or disabled through the treatment. I use this twice a day, but is very useful first thing in the morning.
Some days we can be in and out of the hospital in half an hour, but this is rare. More often than not we end up having extended appointments or being reffered to another specialist and a one hour day can easily turn into four! It's great that they are being so thourgh, but it's takes its toll on me. I find after a short time now my voice gets very weak, not good when you are having to answer so many questions. I often get back to the flat and pass out in my room. I did yesterday at 2pm and woke up this morning! I guess it's the cumulative effect of the treatment as well that's knocking me for six.
We had a bit of a scare last week, I started getting intense pain in the base of my skull. The kind of pain that stops everything and on a few occasions it dropped me to my knees. I had something similar  following treatment first time around, but when I reported it to the hospital in Cornwall the said it was to be expected and there was nothing they could do. This was not the response here... they were deeply concerned! This freaked me out quite a bit and despite the doctors saying "we need to scan you to make sure everything is okay" and " don't worry too much it's unlikely that it's the cancer spreading"... I had heard those words before and they offer very little reassurance. So once again we enter into the process we know all to well. The CT scan was done on the Friday morning and I got a phone call from the head and neck nurse that afternoon to say that there was "no evidence of cancer in that area"... the relief was immense!
We had a meeting today with the Maxi-Facial surgical team. They want to do a graft that will seal the hole in my jaw that links my mouth with my sinus. This was originally cause be the removal of a wisdom tooth following my first treatment. The bone in my jaw has been unable to heal due radiotherapy damage. The infortunate side effect of this is when I drink, liquid makes its way from my mouth out of my left nostril at random. Not a major issue... just embarrassing. They want to resolve this, but won't be able to do anything until the radiotherapy treatment has ended and the damage has healed. He did mention that he was hearing from all the different departments that my treatment was looking really good and is very much on track for being successful. This was another great piece of news! While we know nothing is ever certain in this game it was still nice to leave clinging to the positivity of his closing statement.
It feels like we are one the home straight now with end most definitely in sight! I know Joel has been struggling this week and even though I speak to him daily it's always very upsetting for him to say goodbye. In all honesty I've just had to try and put it all out of my mind as much as possible. It's the only way I can cope. I only have to dwell for second on home and realise how much I want to get back there. The feeling is crushing and I try not to go there. It's been nice to see friends who have visited as well, but we made a desision that was encouraged by the doctors that the remaining time here in London is to be dealing with what is most important... and that's the treatment.
So... just 7 RT sessions to go. I spoke to Bethan's dad today and we arranged transport back home to Newquay on the 12th of Feb. I honestly can not wait to get home.

Vampie walruss and a throat full of razors...

It's been a really interesting two weeks. The daily radiotherapy has taken place as planned and so have the blood tests and meetings with the different members of the Marsden team. I have felt no ill effects and have enjoyed getting out and about, taking photos and seeing as much of London as I can, but as I sit here writing this I can confirm that during the last 48 hrs the side effects have deffinately rolled into town. It started a few days with a tightness in the left side of my jaw and a large white ulcer in the back of my throat. I had noticed that I was talking through my teeth a little more especially when I was tired. Thursday's RT was followed by a meeting with the Head and Neck specialist nurse, the dietitian and the speech therapist. A very eager and helpful bunch, but the meeting felt a lot like an interview in front of a panel. They were shooting questions at me left and right about my last experience with cancer treatment as well as this recent bout. They were certainly thorough. With my jaw tightening due to the effects of the radiation the speech therapist introduced me to a new method of stretching the tendons at the side of my face. "Have you used these before?" She said holding up what looked like a large wooden lolly stick. "Nope" I replied. Standing me I front of he mirror she passed me two small stacks of these wooded tounge depressors and had me place them in between my teeth at both sides of my mouth. I can only open my mouth about 15mm on a good day, so as she started to slide more of these sticks in one by one the pain increased very quickly.  I suddenly find myself standing in front of the three doctors looking like a vampire walrus with these two stacks of wooden sticks slotted in each side of my mouth... in a lot of pain as it stretches the damaged muscle and sinew in the sides of my face. "Do this four times a day... okay?", "Yeeeshhh" I reply with a tear beginning to form in my left eye. I returned home laden with panflets and info guiding me through what they do and contact details should any major issues arise. I try And forget the rather strange meeting with the head and neck team and focus on the fact that I have just one more session early Friday morning and then Bethan and the kids get here for the weekend. Thursday evening offered a chance to esscape. I met with an old friend of mine who I used to skate with back in the early 90's. We met at Southbank skate park and after a quick coffee had a wander into town to look at a few other old skate spots and shops. We wondered about just chatting and catching up. It was nice to forget about the whole cancer treatment grind for a little while. We went for dinner and then went on to watch Henry Rollins perform at The Barbican Theather. It was a really good time and a welcome break.
Bethan called to say that they are only 10 mins away in the taxi on Friday afternoon. I go down the foyer of the apartment block to watch for them arriving. A black cab rolls into the forecourt and I see Cerys looking out in amazement at the huge buildings all around and Joel's crop of crazy blonde hair bouncing up and down in the back seat as he spots me in the revolving doors. I had been waiting what had felt like a very long time for this. Despite the last two weeks going quickly I have felt their absence during every moment of being here. I drop to my knees and catch them both in a joint hug trying to hold back the tears of relief. I feels so good that they are all here. We throw their cases in the apartment and head round the corner to this old pancake house that we had spied in the week. They serve huge old style pancakes with pretty much anything you can imagine on them. This was a big hit with the kids although they found out that they both hate Nuttella and once again London's amazing  ability to empty my wallet was proven. It was worth it though just to see those smiles again.
I woke this morning with Joel staring into my eyes "Is it time to get up Daddy?". We have one day together before they head back on the Sunday. I had high hopes that this was going to be a special day that we could really pull out the stops, but as I lifted my head off the pillow I realised that things weren't right. Swallowing felt like the back of my throat was being slashed with razors and I felt exhausted. We had a late start but got into town for lunchtime and after visiting a couple of the hilariously posh sports car showrooms that are dotted about (at Joel's request) we headed to the kaos of Hamleys toy store and let the kids pick out something they liked. When we got back I felt terrible, not because I was tierd, but because I wasn't able to be there 100% for the kids. I wasn't feeling good at all, so went for a lie down. Bethan came through and assured me that the kids were completly happy and had come to see me and not London. It helped me re- frame the situation and ease the anger that I was feeling towards the situation. I think I had been feeling under pressure to make sure they had the best time possible.
So, Friday's RT session was number 10 of the 30 treatments. I just hope that things don't get too much worse with regards the side effects and I can get through the next four weeks without any serious issues.

London Calling...

It's been a strange time since my last post. Getting better and better with the negative effects of the surgery fading away and even the mental side of things that I was struggling with so much have gotten a little easier. My energy levels have pretty much returned which has meant being able to get out and about and see friends and spend more time with family, taking Joel to see Star Wars being a major highlight! The weeks that have lead up to Christmas have been good, despite the lingering thoughts of what lies just after New Year with the move to London. I've had Radiotherapy on my head and neck before. The treatment I had was extensive and left me unable to eat and drink for over three months. I lost four stone and was ill to the point of needing regular blood transfusions. It was a dark time that to this day I still struggle to recall in much detail.
While attempting to brush the negatives to one side, the weeks and days have been steadily counting down until one day we suddenly find it almost time to go. The weight of what I was doing hit me hard. Not only was I leaving my family and friends behind for 6 weeks, but my home.

I love Newquay, I always have. I have never really liked leaving the place and always feel very happy when I return. I don't expect everyone to feel how I do about the place, but to me it's always had this magic about it and I've always been glad to call the place home. The train was leaving mid afternoon on the Sunday. We had decided it best that my mum come up with me to London and Bethan stay behind with the kids so that they can continue with school as normal and a least have one of us there with them. I sat with my mum and Bethan in the kitchen and and while we were talking travel plans through I could feel myself welling up. The thought of leaving the kids and my home was suddenly more overwhelming than ever before. Joel came through and jumped on my knee announcing that he didn't want me to go and broke down in tears. It was horrible, there was only a short time left before we set off to the station. I didn't know what to say other than the standard "I will see you soon, try not to be upset", but none of this did anything to console him. We left, the drive to station was in silence... there wasn't much to say. I was devastated. Me and my mum boarded the train at Bodmin and we were on our way. A few hours later we pulled into Tiverton and we looked at each other as the temperature dropped in the train and the engine switched off... we had broken down. After a brief wait we were put on a another packed train full of people traveling after Christmas. Mum and I were crammed into two tiny seats with our suitcases under our feet for the remaining 5hrs of the journey to London. When we finally got there it was late and we were tired. We found the apartment and got some supplies from the supermarket over the road that would see us through till morning. I spent an early night thinking about everything that has happened and what was about to happen over the next 6 weeks.
Radiotherapy is given in Fractions, this means it's a large dose of radiation broken down into smaller doses, usually given daily. This means I will need to attend daily appointments to receive my treatment. I had been issued an appointment sheet with all the dates and times of my 30 radiotherapy sessions. Each appointment should only take about 20 mins, they zap you and then let you go. I'm not having RT to the levels I had first time round, the dosage is less and the area it's applied to is smaller. With this in mind I hope that the side effects will be much less. The side effects of RT include, weekness/tiredness from changes in blood levels, internal sores, dryness as saliva glands are permanently damaged, headaches, sickness, general pain and burning to the skin where the beams of radiation enter. The issue with re-radiating a patient who has already received high doses of radiation are things like, hemorrhaging, osteonecrosis, plus many more really scary things that usually happen some time after treatment ends.

I show up at my appointment at The Marsden, instantly I'm scalded for not bringing my appointment card. After a short wait we are shown down the maze of corridors that end in the Radiotherapy department. Some of the Radiology team I have met before and are really cool people, super friendly and really put you at ease. I hop up on the table, lay back and the mask that was made last month is placed over my face and I'm bolted down. After some prodding and adjustments the staff leave the room and even though my eyes are closed I sense the machine quietly moving around me. There's no pain, not even the slightest sensation, just the occasional click or sound from the machine as a local radio station chatters away in the background. "That's it Mr Mcqueen, we will see you tomorrow" said one of the nurses, and that was that.

We walked through the now darkened streets back to the apartment with a keen eye on the crazy rush hour traffic now screaming through town like a river of lights, wheels and angry car horns. It leaves me feeling a bit like the country mouse blinded by the big city lights... but I'm sure that won't last too long.

The Next Phase

I was very wrong in thinking that I'd be "right as rain" in a couple of weeks following the operation. While not in any pain as such, there seems to be no escape from a tiredness that never seems to let up. It has stopped me in my tracks for weeks now, where the simplest things can take hours to achieve. I've only felt like this once before and that was when I was going through Chemotherapy. It's not just a bone-tired feeling in your body, but a fatigue that grips your mind, making thinking and memorising things scatty to say the least. It was getting so bad that I booked an appointment with the GP to talk about it as well as few post-op issues that had come about. I went along with my list of symptoms looking for answers. The numbness across my face, the weird "wet cardboard/burning rubber" smell coming from inside my sinuses and the strange piece of clear fishing line that seems to be holding the inside corner of my eye together which is now protruding internally from my left nostril, which when I gently pull the bit hanging out of my nose, it moves the corner of my eye!
I go through the list of issues with the doc and she is understandably reluctant to address any of the surgical stuff and asks that I see my surgical team about these things... fair enough. She went on to say the tiredness is a combination of the regular effects of having had major surgery and trauma of dealing with what's been happening over the last few months. I think she was right on point in saying that no "magic pills" are going to change the way you feel about what you are dealing with and suggested some kind of counselling. I had some counselling following treatment last time, it helped to be able to "spill ya guts' to a complete stranger and pass all that emotional baggage to someone qualified to deal with it and not just burden friends or family members with the constant "cancer, cancer, cancer" conversations. I can see how that would wear someone down, especially family members dealing with their own version of what's going on. The issue here is that they have admitted that there is a "gap in services" when it comes to dealing directly with the psychological issues brought about by cancer survivorship. Anyway more on this later...
We have a set of appointments to attend in the early part of the week, so we head up on the train to London with the kids on the Saturday and stay over a few extra nights with a view to making the most of some time as a family. I would have loved this to be the case, but I spent virtually the whole two days sleeping or struggling not to fall asleep in public. This often ended up with me having to go back to the hotel and crash out while B and kids went off and visited places and did fun stuff together. I found this really gutting I have to say... I tried my best to be part of it, but the weight of the fatigue just wouldn't let up.
It came time to get to these multiple appointments, first up was the speech therapist. She went though a few measurements of mouth opening and ability to eat and swallow so as to record changes that will occur through the Radiotherapy. We also got to speak about what the GP had said about the role of depression and anxiety in all this and she mentioned that The Marsden has its own systems in place to deal with the patients specific needs and that she would set up meeting for as soon as my treatment began after Christmas. This sounded more like it...! We then went on to see Prof Nutting. All the tests and biopsies were in and he confirmed that I have the exact same cancer as before and echoed how delighted he was that the results of the neck node were a false alarm and how this adds to the chances of getting the cancer gone. He checked out the area where the surgery had been done using a flexible endoscope and confirmed that it is 50% healed and looking good. He then went on to tell us that radiotherapy treatment will begin daily from January 4th for six weeks. There will not be Chemotherapy and he will only be using radiation on a very small/select area where the remaining cancer cells are laying in the lining of my upper throat behind my nose. He then drew a diagram showing how the beam of radiation will pass through both sides of my head just in front of each ear and meet in the center where the remaining tumor cells are located.
This means a few really good things regarding the impact of this treatment. I know first hand how brutal radiotherapy can be to the head and neck. The last time I had it my mouth, tongue and throat completely shut down and had to take liquid food, fluids and medication trough a tube in my stomach for well over three months. I lost about four stone in this time and for a time thought a might not make it... it was very rough indeed. Re-irradiating this area is not with out a whole new set of risks and issues, but fingers crossed this time should be know where near as severe.
Prof Nutting rounded off our meeting by saying how this is still a very complex issue, but he was very happy with how things are going. " We have done the kind of salvage procedure before with great success, touch wood this is the same..." and having dropped that little nugget of positivity we all shook hands and left for the next appointment feeling a little bit happier about things.
The next appointment was to have my mask made. This is a Kevlar mould that holds the patient's head still whilst having the Radiotherapy. It’s a pretty relaxing process, the composite sheet is heated using hot water and then placed over your face and shoulders as you lie on a metal bed. "They call this The Chelsea Facial" said the assistant..."Better than The Chelsea Smile!" I mumble through wet layers of plastic. It takes an few minuets to cure and I'm released back into the world...

I return the following day for a CT scan wearing the now fully hardened mask and that's that, no more hospital's till January all being well.
We get home late on Tuesday night, it’s been a loooong weekend peppered with good bits and very tired bits. The kids have loved spending time with family and seeing a little bit of London, but it's very nice to be home and looking forward to a few weeks of down time before Christmas and New Year.

Back in the game!

I'm sure if you've been following this blog you will have noticed a running theme of frustration, anxiety and fear... and with good reason. We have bounced from bad news to not so good news back to terrifying news. It's been a rollecoaster built mainly of low points. We were denied the all important info that we had travelled to London for last week leaving us all in complete limbo regarding the rest of the treatment and the suspicious node which was surgically removed from my neck. It was made clear that if this node was contained cancer cells it would sugest that the cancer was well on its way to developing elsewhere in my body and so limiting greatly any chance of cure.  We had been told that the call would come from London on either the Monday or the Wednesday of this week... well it came today instead while I was driving to Trelisk hospital to get my ear looked at. The phone rang, I pulled over. It was Professor Nutting "Hello, firstly great news on the neck node, it's come back clear from the lab"... I could have cried with relief, instead I almost punched a hole in the roof linning of the van with joy!!! He went on to say that he needed to see my in December at some point to discuss Radiotherapy, but that won't start until after Christmas. All I had in my head then was that I will be at home and well with B and the kids over Christmas.... Yes!
I realise that I'm not out of the woods yet by a long way, but this means I'm at least back in with a fighting chance, or to use Peter Clarke's words "back in that 20%". It has been the best day I've known in a very long time indeed. I still have cancer, but for the first time since this began it feels like the dice has finally rolled in my favour, and for that I am very thankful.

Dooche Bag...

It's been a tough week so far, hanging in limbo once again. My mum is staying with us at the moment which has been amazing. She is one of those people who just rolls her sleaves up and get the job done. Beyond that it's been a comfort to have someone close to talk to about all this. Don't get me wrong, friends and family have been overwhelmingly supportive, but there's certain things that only your mum understands. I've been really struggling to sleep this week. I'm finding that I'm waking up at exactly 2:15am every night and it takes until about 5.30am until I can get back to sleep. This is leaving me tired and grouchy through the day and it makes it much harder to keep a positive outlook about the situation. The kids have been struggling to. Joel has become very rude and aggressive towards everyone, much to our despair, as this is not the little boy we know. I'm still not feeling that well. I walked into town day before yesterday and met with friends. I have to say, it felt like running a marathon. I got home and slept all evening. This lack of energy plays a big role in Joel's attitude at the moment. It's clear to see he's angry because he doesn't have acsess to his dad in the way he needs. This only adds to the enormous guilt that I feel about putting my family through this. It also hightens my awareness that things are going to get much worse before they get better. It's easy to say "you shouldn't feel that way", but I do. I see and feel the daily impact this is all having on everyone and it saddens me. The hardest thing in all this is not the pain or the risk of the treatment, or not being able to do the things I love, it's this overwhelming fear of my family losing me. The thought of the pain that would cause in them is what keeps me awake at night. I know this is very upsetting, personal stuff, but I need to vent this as I'm so tired of dragging it around with me day and night. I know 'it ain't over till it's over' and I'm going at this full tilt with regards getting on with the treatment ,but there's no escaping the severity of what is going on here.
On a slightly lighter note. I forgot to mention in the last post about 'Nasal Dooching'... yeah, me either??? During the last meeting with Peter Clarke he mentioned that I should now be nasal dooching twice a day. This involves boiling up water and letting it cool to body temperature, adding a perscribed mixture of salt and bicarb soda to a special steril plastic bottle. Then, while inserting the nozzle of the bottle into one nostril, squirt the contents up there in one go allowing it to drain out of the other side. If you need to, YouTube it. Aparrently it's a bit of 'a thing'. Expecting this to be a complete nightmare, I set everything up and went for it. As odd as it sounds, it was actally quite pleasant! The stuff that came out was incredible, but my nasal space and sinuses were left feeling amazing! Anyway, apologies of this post is s bit of a bummer, we are expecting the call with the all important results either Monday or Wednesday... so until then.

There and back to see how far...

This was the big one, the meeting with Prof Nutting and Clarke that will finally give us plan to work to. We arrived in London around midday and met Bethan's family for lunch. My nose is still dripping with watery blood every so often, so it was a bit uncomfortable and embarrassing trying to eat a meal in public. Anyway, it was nice to see everyone and catch up on the weeks events. I feel like I'm healing from the surgery, but it's not been that straight forward. Everyday has been about wrestling with endless fatigue and despite the initial 'high' of getting through the procedure I was quickly brought back down to earth with a bump with in a couple of days of being back at home.
3pm quickly came around. The clinic is running late, which added another 40 minutes waiting time. It was unbearable sitting there in the waiting room imagining the different things we could be told in the next ten minutes and how that information will impact on our lives.
Finally, we were called through. Peter Clarke is sitting in the corner of his office, no Prof Nutting. After the usual greeting he is quick to tell us that the pathology report is not yet through. I felt mine and Bethan's hearts sink simultaneously. He proceeded to look me over and seemed pleased with the healing and that vocal and swallowing movement had been retained. Then this, "The thing we really need from the report is the information regarding the node that was removed from your neck. This will truly determine what we can offer you regarding further treatment".  Okay... but that node was checked last May and was "benign". "Yes, but if cancer cells are found to be with in it you will be looking at signifficantly less than a 20% chance of cure". In felt my jaw drop. "You must understand Mr McQueen, if cancer is found in this node it may well be that you will have to weigh up whether you feel the small possibility of effective treatment outweighs the poor quailty of life it has to offer" I have read about the 'quality vrs quantity" argument and people refusing treatment based on the option of having less time feeling normal rather than more time  under treatment crippled with sickness and always wondered what I would choose if faced with those options. This is all if's and but's based on getting this report, but once again the picture being painted is very bleak indeeed. "So, when will we know?" I said. He then went on to explain that Prof Nutting would call next week. I could feel the numb, hollow sensation of dissapiontment knowing that it would be yet another dark week of unbearable mental grind, trying to rationalise the situation and 'stay positive'... it's virtually impossible.
We flew home that evening crushed at the lack of real information. We put the kids to bed and sat up talking, but I think both of us had had enough of the day. So, what now? Once again we wait, we try and carry on as normal and either block out or accept that the news we recive next Wednesday via a phone call from Prof Nutting is going to be one of the most pivotal bits of information we likely to recieve in all of this. From there we will truly know the severity of what we are facing and the future impact it will have.

A busy two weeks...

Okay, I need to do a "catch up" post because tomorrow we fly to London again to get the results of last weeks operation and find out the rest of my treatment plan.
It's been an eventful few weeks, but here it is.

I had it in my mind that the week leading up to my operation in London to remove most of the tumor from behind my nose would be spent with family, resting, eating well and getting physically and mentally ready for this pretty hefty surgical procedure... not to be. On the Tuesday before I started getting severe pain inside my left ear. With in a few days and few more visits to the local GP I was on morphine and off to hospital with swelling in the side of my head that made my look like the guy off the Goonies... "Hey You Guys!". They kept me in for two nights on IV anti-biotics which seemed to do the trick, leveling out what was a pretty aggressive ear infection. The hospital were very good in that they kept regular communication with the doctors in London regrading my condition and took advice that would insure that the op would go ahead as planned on Monday. I was Lucky that we have a close friend who works as a nurse in hospital who was on hand with help and support (thanks Claire!)

On the Saturday I was released from Truro hospital and spent one night at home before it was time to jet over to London for Monday's operation. We met with family and spent the night in a really nice hotel just around the corner from The Marsden. I ordered a steak on room service, knowing the possible aftermath of the operation, and well as that from 7am I wouldn't be allowed to eat until after the operation. On the Monday we arrived at The Marsden surgical wing and booked in. There was a long wait as we were moved form waiting rooms, to cubicle, to ward with blood tests and forms filled in and extracted at every turn. The anaesthetist called by and asked a few questions and finished up by say that she was going to get me "so high, that I will feel like a one man party!".. okay, lets do this!

4.30pm came around and I was sitting in my room staring at the hospital gown folded on the bed when the surgeon and his registrar burst through the door and after a brief hello dropped two disclosure forms in front of me saying "have a read and sign please"... I didn't need or want to read them. Either they do the surgery and stand a chance of living or the don't and I die,... easy choice, I sign. "Your very late, get ready quickly" they barked before exiting the room. I stripped and climbed into the surgical gown... it was extra small! Okay, no problem there's a dressing gown thingy too... I put it on... it's extra extra small!!! I look very stupid. Not to worry though, I'm sure I'll be wheeled down a maze of discreet corridors and service lifts? No, I'm frog marched with my undersized surgical wear down the public lift through the busy reception of the hospital... not good. You could see it in peoples eyes... poor man.

There's no tranquil pre-op environment to chill while the anaesthetist applies her relaxing chemical assistance, no... we walk straight into theater. "Bet you've never seen a microscope that big before" chirps the anaesthetist pointing a large black machine in the corner. "We are going to be using that on you in a bit!"... I was finding it difficult to get excited.

It's been a long day so far and we have come a long way. I'm standing there in a mini dress wearing a child's dressing gown, in a freezing cold room full of super busy people in blue surgical scrubs and masks. Relaxing on the cold metal bed and feeling the sting of the cannular in the back of my hand was almost welcome... this was it, we're off. I felt a warm flush go through my brain and I was gone...

I woke 3 hours later with someone speaking to me on my deaf side, I had no clue what they were saying so answered with a default "I'm fine" to everything that sounded like a question. The surgeon strolled up "how did it go?" I asked... "very well" he replied and walked away. The next thing I remember is being back in my hospital room with a guy praying over me. It was confusing, I didn't feel like I had or was about to die... but there's this guy in red lumberjack shirt blasting prayer rock from an i-pad and chanting out some kind of prayer. Bare in mind, I'm fresh out of surgery, I'm guessing I've been back in the land of living for less than half an hour... reeling from the drugs they had applied to keep a 14st man stone out cold for three hours, things we're weird enough! I mentioned this to Bethan in the morning and she insisted that it was a morphine induced hallucination. I needed to find out. Relief came when I checked with a friend I had worked with who is part of a church based in Truro. The church leader works in London and felt it was necessary to pay me a visit. I'm not a particularly religious person, but under the circumstances I'm not going to turn away any form of positive energy... but the timing was a little strange!

I awoke the next day and assessed the damage. I did this by turning my camera phone on myself like a mirror. I was hooked up to a drain which ended with a clear pipe coming from my neck. There was a large 6" incision in my neck where they had removed the two lymph nodes. I had tape all over my face supporting a plaster cast that covered my nose and heavy wadding that was soaked out with blood from my nostrils. I could feel the stitched in my upper gum below my top lip, they felt like very fine barbed wire. Overall, I was in no pain at all. I looked down a saw an old friend... a morphine trigger. A small plastic switch with a green light on top. When the green light comes on you can self administer another small dose of morphine. Bethan arrived to find me happily clicking my way through the morning. Beyond the morphine though there was this state of euphoria and relief. I was glad that things had gone to plan and that a large amount of the cancer had been removed without any of the serious issues I had discussed with the surgeon. My vision was intact, my voice was working, and I didn't bleed to death... cool!

As the days went by the drain was removed and sections of dressing were taken down. I felt myself being freed of the medical umbilical of the hospital's care until finally on the Wednesday the doctor announced "I think you should be good to go home tomorrow"... Home? I'd blocked it out, but that hadn't stopped me missing the kids terribly. I was discharged and we flew home on the Friday. That feeling...you know that feeling when you get back off holiday and you drink tea from your own mug, you wash in your own shower, you sit on your own toilet... The sun was streaming across the river and through the back windows as we were greeted by my Mum. The kids weren't long home from school, so we sat and talked and just soaked it all up. So good to be back.

The weight of the wait...

It's been an awful week. The weight of not knowing bearing down every second of everyday. I would love to say that I've just been able to switch it all off, but I haven't. I would love to say that I'm strong, but I'm not, I'm just like anyone else in this situation.... afraid. I woke up this morning with my pillow covered in hair. I've never lost hair due to stress before, but it brought to light the impact of how we are living through this at the moment.

Today is the day we get the call and find out what is going on regarding treatment. I have sat all day and watched my phone like a cat would watch a goldfish. At 5.25pm the call came, it was Peter Clarke (surgeon) from The Marsden...

He began by saying that the tumor is not inoperable, but it can not be removed entirely using surgery alone. There are sections of the tumor that are to close to sensitive structures for surgical intervention alone to be successful. He suggested going in lightly, removing a small amount of the tumor and limiting damage as much as possible while identifying what is tumor and what is RT damage from previous treatment. This information will then be used to guide the back up plan that Prof Nutting would perform with radio therapy and Chemo. With this on the table I could now make my feeling towards this known. I requested that he is as aggressive as possible regardless of risk and permanent damage so long as he feels it will open up a better chance of cure. My feeling on this is that I have nothing much to loose at this point, and if it came to it and we run out of options I would hate to be on my death bed thinking "what if" or "I wish I had"... and if this does end up taking me out I will have done my very best in committing to the treatment. He explained that this more aggressive approach could potentially open up options once he is in there, if this is the way I want to go. I do... if this is a one time deal I want get the best chance at this. I think anyone would wouldn't they?

He went onto explain that he will need to work very closely next to the nerves that control eye movement and the dreaded Carotid Artery, in his words "I don't want you bleeding to death on my operating table.... I'll try not to. 

In addition he mentioned that there is possible involvement with the lining of my brain, he is still uncertain and this can only be confirmed surgically. If this is the case it changes the game quite drastically making a cure virtually impossible... but this is yet to be seen and will be confirmed or dismissed after the surgery has taken place. 

Once the result/mapping gained from the surgery the RT/Chemo approach can then be decided by Prof Nutting. The whole thing will be implemented over 6 weeks or less depending on what Prof Nutting decides once he has the information from the surgery.

He is still talking about a 20% chance of cure, which we are all holding on to desperately at this end. His closing words to the call were "let's try and get you inside that 20%".

It feels as though it's time now to let these guys take over, to stop trying to second guess everything and let them get on with what they do and hope it goes the right way.

The operation will take place on Monday 9th of November.

The other side of the coin...

Just returned home from London. Bethan and I flew out again from Newquay at 11am this morning to Gatwick and took the train up to London to meet Head and Neck specialist surgeon Peter Clarke at The Royal Marsden.
We had time to find some lunch and a sit down so we could get ourselves together before the 4.15pm appointment. We were still in a very comfortable place (mentally) following the meeting on Monday with Mr Nutting, so we were able to sit and enjoy spending time together without the doomy feeling that has been hanging over us both for the last three weeks. We had hit on some progress and to use his words we're "on the right side of a bad situation". Today is the day where we see how it's all going to unfold... or so we thought.
Anyway, we arrived at The Marsden a little early again but were called through quite quickly this time by Mr Clarke. We were sat down in his office and looked forward to another blast of optimism. Not to be... he went straight into explaining how they have to carefully consider the use of surgery in this instance. The tumor is very close to the Carotid Artery that supplies blood to the brain, it has also grown into the muscles in my jaw. This means that treatment of any kind is very risky indeed due to the risk of long-term damage and possibly death through the treatment alone.
He went on to explain the surgical process, (without getting too gory) involves an incision in the upper gum above my front teeth and the removal of a section of the soft pallet (roof of the mouth). This alone with the tumors removal will have a permanent impact on swallowing/eating and speech down the line. All this is doable and I'm happy to live with the consequences if it gets the job done, but that's the problem it won't...well not 100%. The complete removal of all of the tumor through this method of surgery alone is impossible. This means that everything hinges on the effectiveness of re-radiation as a follow-up to the surgery. Here's the scary part... he then went on to say that "Not only is there just a 20-30% chance of "cure" using this process. If the tumor does not respond to the Radiotherapy a second time... I will have only 6-12 months to live and that is with Chemo holding things back, far less than that with out the Chemotherapy"
We were utterly lost for words... we had only been in the room the day before yesterday bathing in rays of hope from Nutting, only now to be brought crashing back down to earth with this brutal new perspective... it was heart breaking. I felt myself trying to hold back the exact same sentences that I said when I was first diagnosed in 2011. "There has to be something more out there...there's more to this than just me you know, I've got two little kids, what are they going to do without their dad?"... but I said it all anyway, it dipped out of me like a leaky tap. He's heard it all I'm sure and sat back in his chair and said "There's no escaping the gravity of this, but what we do now is get our heads together and try and find the best option for treatment".
The meeting was quickly running out of steam, there was that sense that everything that could be said, had been said and things could easily start to just go around in circles. "We will discuss our plans and options for effective treatment and come back to you next Wednesday". Great.., another unbearable week of uncertainty.
So, there it is, in short... they're going to try some stuff, if it works, great! I survive with life changing issues resulting from the treatment. If it doesn't work... that's it.
I've read repeatedly about the various options out there, it seems crazy that the options in my case are so limited. These guys are the best though...so we don't have an alternative.
We returned home, I stared out of the window of the plane into the dark the whole way back... furious at the doctors that have treated me in the past for not seeing this sooner at a point where something more could be done, sad for Bethan sat holding in the tears in the isle next to me, distraught at the thought of my kids growing up without me... at the same time while this is all swimming around in my head I'm anchored to the thought that they are still using the word "cure" and that there is still a chance of getting out of this... we just have to hold on.

Day trippin'...

Early start and we're flying off across mashed potato skys to London to meet Professor Nutting at The Royal Marsden Hospital. We arrive two hours early, but let them know we are here just in case there was a chance of being seen early. As I'm sat filling in forms I get a "No ID Caller" come through on my phone... it's Prof Nutting's secretary wanting to know where my most recent scan is, as it hasn't arrived at her office. I panic! I was told by the secretary at Trelisk that all info was forwarded last Friday. I'd spent four hours last Friday making sure that all the information needed had been passed on. If this scan isn't here in London it makes the whole trip pretty much invalid.
After a few minutes of calls to and from Trelisk Hospital the CT scans are found and sent over to The Marsden... and we both breathe a sigh of relief.
A glance around the waiting area, it's full of people from all over the place, different ages, colours, religions... whatever, pretty much all with cancer. It just hit home once again how indiscriminate it is. 2.30pm comes around and we are called in. Nutting introduces himself with a strong handshake and we get down to business. I didn't really expect much in the way of answers today as I knew that this would be more of an introduction as a "new patient", but he was quick to tell us the score. "You have to understand this is a very serious situation we are dealing with here". "When a tumor returns like this having been treated with Radio and Chemotherapy it becomes highly resistant to treatment".... I felt my throat tighten. "We are looking at surgery as the only possible method of cure in this instance".... okay, he said the magic word "cure"!
I had read pretty extensively about breakthrough treatment using endoscopic and robotic surgery techniques. A lot of them pioneered by a man called Peter Clarke who is based at TRM. It turns out Mr Clarke is the man I am being referred on to.
The first time I went through treatment I wasn't ever shown any of my scans or the images of my tumor... to be honest, I hadn't really wanted to see. Today was different... there it all was on the screen in glorious 3D, the inside of my head with the primary tumor illuminated with radioactive dye in the back of my nasal space about the size of a twenty pence piece just below my sinus cavity and brain. Nutting explained that we are "on the right side of a bad situation" due to the fact that the tumor is yet to move to bone or vital organs, is not yet in my brain and hasn't invaded my sinuses. He was quick to say that if that were the case we would then be looking at Chemotherapy only as a way of trying to control the tumor and extend life for as long a possible rather than getting rid of it for good...
I'm back there on Wednesday to meet Peter Clarke to discuss how it is all going to move forward with the operation and there was also a mention of the possible use of Cyberknife as a follow up treatment. This is an accurate single dose radiation treatment that will be used to unsure that nothing has been missed.
We shook hands and said goodbye.
We walked out of the waiting area and into the hallway. I was a bit numb to it all, it felt like I'd just had a 500 gigabytes of information downloaded into my head and there was an immediate need to process it before normal function could resume, I think Bethan felt the same... we needed a brew!
On the drive back to the airport I called my Mum and told her the news as I knew she would be sat in the front room of our house on her seventh cup of tea worried to death. The flight home was pretty sedate, though not physically tired, I think we both needed to give our brains a rest. It had been a day full of stress, worry, relief and excitement all rolled into one.
We arrived at home and I needed fresh air... I walked alone along the beach just as the light was dying off trying to process the day when I realised, I won't be doing Chemo! I will be able surf once I've got over the op. There's a really good chance that life won't be completely shut down for an entire year like that first time around. Things are still pretty scary, and I'm sitting here with cancer in the middle of my head, but it feels like things are looking up.

Scans and plans.

The biggest concern since finding out we were back in this has been trying to measure how different things will be this time round. I'm a terrible second guesser, by that I mean when I'm placed in a desperate situation like this, I will unhappily sit around thinking of the hundred and one ways that things can possibly play out (positive and negative) based only on the limited information I have. I guess some people have the ability to compartmentalise these things, sweep them under the carpet and keep on truckin'... not me I'm afraid, I'm a total whittler!
We have plodded through this last week taking each day an hour at a time while we wait for the fragments of information to be fed to us as this new chapter unfolds. Wednesday saw us driving over for a late appointment at Dorset Hospital. The mobile PET/CT scanning unit that services the South West was making its weekly stop there and this was the quickest available appointment. It was nice to spend time with Bethan and we stayed over with family close by, which offered a welcome dose of laughter and helped to chase away the looming tension following the scan. This scan forms the final piece of the diagnosis and will show the current state of the tumor(s) and how they are acting in the body. It will also show any metastasis (spreading of the cancer) to bone, spine and major organs. If this is the case it will seriously effect the treatment and whether they will be looking to cure (gone for good) or just treat (suppress and slow growth) the cancer. We were told that following the scan we will receive a call on Friday providing us with the scan report.
We drove back home on the Thursday and it was hard not to think about what is just around the corner. Visiting Poole hospital was a stark reminder of the cold, harsh world of hospitals and cancer care. The everlasting corridors, the "brutal" architecture with wall to wall sickness built in as standard.... it's just grim! It brought the last time I went through this flooding back in waves of fear and anxiety.
We arrived back home early Thursday evening and the kids were up and about, excited to see us. The Grandma's had been looking after them both while we were away so they had been spoilt crazy. We were both very tired from the drive and whole Dorset experience, so weren't to far behind the kids in hitting the hay.
I woke at 4.30am the following morning, the wheels in my head turning. I went down stairs and lay in the sofa in the dark once again summing up all the possibilities that lay ahead. Today was the day we would get a glimpse into the future as the final piece of the diagnostic puzzle falls into place.
The phone rang at 10.55am. I almost dropped my coffee muddling to answer the "No Caller ID" phone call... It was Jackie, the Head and Neck Specialist Nurse. "No report yet, but I thought I would call and let you know all your other info has been sent to The Royal Marsden for your Monday afternoon appointment". I have been referred to a team at "The Marsden" that have a more specialist interest in what I have. The team at Truro were very open in saying that because of its rarity they would be "looking wider" at ways of solving the issue. The plan is that we fly over for the day to London and see Professor Nutting, or as I can't stop calling him "The Nutty Professor". I'm pretty sure I'm going to let that slip at some point... watch this space.
From what I've been able to read and gather together he seems to be one of the best Oncology guys in the country and works as part of a clinical team made up of equally skilled chaps who all specialise in folk like me with rare or hard to treat situations.
"The scan report is not ready yet, but I will call you later once I have it here in front of me" Jackie said. So, I wait...
Eventually the call comes through. Jackie says that she is going to read it as it is. She lists and series of codes and numbers and then tiny bits of positive information like "no evidence of recurrent disease in any other areas". Once she finishes reading the report I instantly start with my storm of questions. The bottom line (and neither of us are doctors), is that the tumor is there in my nasal space and has begun to spread to a Lymph node in my neck... that's it, not spine, not skull, not lungs or any other vital organs as can be the case. This was great news!.... well not great, but it must surely mean we are able to have a good crack at it from a good place? "Yes, I would think so"... Jackie agreed, "Prof Nutting will offer far greater clarity on Monday, and while this is a different situation from last time I don't think it's quite as bad as you possibly imagined it, is it?". Jackie was right, we had had far to long to work out every horrific scenario imaginable.... yes, it's still cancer, cancer that has returned having had everything thrown at it...but for some reason and I'm not sure why, for the first time it feels like it's going to be okay... we just have to hear that in London on Monday.

Couple of big thank you's... Chris and his Brother Paul Stimpson. Close and not so close friends for your amazing concern and support. Easy to think it makes no odds, you're wrong it makes a massive difference! Family near and far for your everlasting love and support.

Back for more...

I'm picking up this blog again because last Friday morning I was told that my cancer has returned.
As I'm sure you can imagine as a family we are all devastated to hear this and it seems as though the nightmare that has haunted us for the last three years has become a reality!
I've been suffering with the symptoms of an ongoing ear infection since last August and have gone deaf on my left side. Following a few courses of anti-biotics and lots of meetings with my head and neck/ENT doctors at the hospital it was decided I should have an MRI scan to see if radiotherapy damage was the cause of the infection not being able to clear. The MRI showed "an area of concern" in the back of my nasal space. Looking back, the tone of the conversations was very different. Usually there was a quirky optimism when talking to the cancer docs... but that had been replaced with a terrifying seriousness. The biopsy that followed confirmed that the Nasopharyngeal Carcinoma had returned, small... but in the same place as before. So... now what? More tests, more scans, more waiting. We are having to go over to Dorset on Wednesday for a full body scan. This more detailed scan is to see if the cancer has spread and will determine the treatment pathway. I'm completely guilty of doing the thing that you are not supposed to do in this situation... research! I'm not talking Wikipedia, but current medical journals and other trusted sources. From what I have found and confirmed as true with the doctors this type of cancer's return presents a "clinical dilemma" in that it becomes a lot less responsive to the standard treatment I had before and surgical removal is virtually impossible due to its location and the surrounding structures i.e brain, nerves and arteries. While this 'research' can empower and arm you with the relevant facts it can also scare the crap out of you! I could start throwing statistics and percentages about, but they are even more depressing. The crux is that  as NPC is very 'curable' first time around, recurrence seems to be a very different matter thanks to the many hazards and difficulties associated with ongoing chemo and Radio Theraphy and the resistance to this treatment that the tumors second appearance offers. However... the doctors really seem to be 'on it'. They have said that they are 'throwing the net wide' in that they are talking to specialist teams at The Royal Marsden in London and have said that it is likely that some of the treatment I need is not available here in the South West or even in the UK, but that's jumping ahead a little in that they still need Wednesdays scan to see the whole picture.
We broke the news to the kids yesterday who dealt with it well it seems, but we are keeping a close eye on them. Even though its early days I've hated the impact the stress and worry has had on us as a family. I've had to drop out of a new teaching job, close my online shop down and the surf contest I had spent 6 months organising wasn't that enjoyable as I was pretty much numb with worry to the point that I could barely surf following the shock of the original scan results. Its been a testing time and we know its only just begun. That said, support from friends and family has been overwhelming and reassuring in equal measure. It doesn't make it that much easier, but we keep telling ourselves we have been here before, we know what's involved and as I said to a good friend yesterday it's not a battle, its not a fight... it's a ride. I think Bill Hicks might have influenced that statement a little.
I realise that writing a blog like this might seem like the usual attention seeking behavior we are all guilty of from time to time, but I genuinely find that it helps me a lot to be able to express what's going on. It proved useful last time as a distraction for me and an efficient, energy saving way of keeping those who want to know what's going on in the loop. I hope these first few paragraphs give some idea as to what we know so far. C

Ice cream man...

I seem to remember this time being a complete mixed bag as far as wellness goes. One day I would be okay followed by three or four days of feeling terrible. I had lost a significant amount of weight since treatment began. I think I started at diagnosis at a burly 15st 7lb, I was now a sniff over 11st with the large part of this weight being lost over the last few months. I would get up in the morning and look down at my bony legs and the ribs sticking out of my back and wonder if this would ever return to normal again. I was still finding it very hard to eat and was relying of the fortified milkshake supplements to get by each day.

My swallowing reflex was barley there and with each gulp there felt to be an ever present feeling that I was going to take the fluid directly into my lungs. This gave the whole experience of taking food onboard a sense of uncomfortable fear which was very destructive as I found myself not wanting to eat at all. The monthly clinic visits I attend have a nutritionist as part of the team. I'm weighed at the beginning of each session to see how much weight I've lost over the month, or to see if things have stabilised. It was noted that I'd been steadily losing weight as the months were slipping by. The nutritionist took us to one side and suggested different ways to eat that would allow me to maintain my weight enough to be able to have my food tube removed. It was early days at this point, but it left me with a strong motivation to eat as much and often as I could in order to get the weight back on, or at least the same at each monthly weigh in.

Because I was limited by my mouth throat and the lack of ability to swallow I had very few food choices. Top of the list was ice cream, it was cooling and easy to swallow. The only issue was the taste, it was like eating cold salt! I would persevere though and proceeded to do a liter of Haggen Das (1100cal per tub!) every evening. I can image for some this sounds ideal, I can assure you its not. It was sickly underwhelming experience. One that has stopped me ever going near the stuff again, even now. On the flip side the weight started to creep back on. The next monthly weigh in I was a whole pound heavier! While the nutritionist was happy it struck me that eating like this is a bit of a daft way of going about things, after all I didn't want to well just so that I could develop another condition down the line. It was time to review the situation and find another way getting the weight on and getting the food tube out.

3 month scan...

It's three months after treatment ended. It's at this point the doctors feel that the damage and inflammation from the radiotherapy should be at the stage were a clear view of the current state of any residual tumor would be clear to see. A routine scan is performed to review the effectiveness of the treatment. Its at this point I find out whether or not I'm clear of the cancer or whether I need further treatment. The scan went ahead as normal and week long wait for the results began. At this point I was very nervous despite the fact that visual examinations of the back of my nose were "looking good". I think the fear of more treatment or the situation worsening with regards the spread of the cancer was an ever present thought.

The week passed quickly and on the Thursday I picked up my phone to see I had a missed call from a blocked number. I felt panic, why the call?, why not a letter?, why do they need to talk to me?, is it news thats too important for a letter?, the worry deepened. I called my oncologist and spoke to his secratery. It was his call, but he will be back in clinic for the next hour. I waited patiently for the hour to pass. Sure enough the blocked number call again. I picked up the phone and went through to the other room.

The doctor asked how I was doing, I said fine so as to move quickly towards the bigger question. "As far as the scan goes, its all looking fine"... I needed more, fine?, not excellent, not amazing just "fine". He went on to say that the area behind my nose was looking back to normal, but the lymph node in my neck had a couple of mystery cells that could be residual cancer cells, but were most likely scar tissue left over from the radiotherapy. He went on to tell me that the team feel that the best thing to do was to take a "wait and see" approach, wait a few months and re-scan, if there has been any change in shape or growth in that area the the lymph node will have to be removed. He wished me well and I put down the phone.

I was expecting to feel elated at the news, but it left me feeling slightly hollow and uncertain, but with a fait sense of relief. I went back to the lounge and told everyone the news. I remember it was a really nice sunny day. The kids were running in and out of the house oblivious to what was going on. I told Bethan and my mum and I think we all had a bit of a cry... in a good way.

The tooth fairy...

The next day I was sent off to be knocked out for the removal of my upper wisdom teeth. It was decided that due to the tiny distance that I could open my mouth I needed to have a breathing pipe inserted into my throat while I was still conscious Once they were happy that I was breathing okay, the full dose of anesthetic could be given and I'll be out like a light and wheeled off to theater.

It was made clear that this procedure is very uncomfortable, but not to worry as they were going to 'numb me up'. After being prepped with needles and lines I was given several cups of anesthetic jelly mouthwash to gargle. I was then give an intravenous shot of something that was described as "like a G&T" and they began.

I was asked to relax as they the three masked figures hovered above me. A metal pipe was put into my mouth and was gradually pushed towards the back of my throat. All of a sudden I couldn't breath and I started to gag. I felt my eyes widen as the sensation of choking and suffocation followed by panic started to over take me. I grabbed out in desperation with a hand landed firmly on the throat of the person on my right side. The last thing I heard was someone shouting "put him out, put him out!" and I slipped under feeling the return of my breath gently moving up and down the back of my throat. When I woke I felt double grumpy, apparently a common traight when it comes to anesthisia. If you go in bad you come out bad, and vice versa. I was wheeled of to the ward to recover.

Once at home I felt dramatically different. The pain in face had halved and I was back home to B and the kids, this was good.